Personal E-Health Records: A Cautionary Tale

It’s damage control time at Google Health. The digital ”personal health record” took a big PR hit earlier this month when a 59-year-old kidney cancer survivor from Massachusetts tried to move his hospital records into his Google Health account and wound up with a file riddled with serious mistakes – like an aortic aneurysm he never had or an inaccurate diagnosis that his cancer had spread to his brain or spine.

Ouch. That’s the stuff that fledgling free electronic health enterprises – including Microsoft’s HealthVault and Revolution Health – live in fear of happening. And it’s the stuff that makes consumers slow to adopt this technology and keeps privacy experts up at night.

Turns out, the e-debacle was really the fault of the hospital, Beth Israel Deaconess Medical Center in Boston, which acknowledged its mistake in sending insurance claims data to Google Health. Such data is inherently unreliable for summarizing medical histories because billing codes are often imprecise, reflecting the use of a “close enough” code for payment purposes rather than actual clinical information.

Google Health, to its credit, is addressing the problem head-on. In a Google blog item posted this week, Dr. Roni Ziegler, Google Health’s product manager, said he met with the hospital’s chief information officer, the patient’s physician and the patient himself – tech-savvy blogger known as ”e-Patient Dave,” or Dave deBronkart, shortly after the incident became public. Beth Israel agreed to stop sending the billing codes to Google Health and use instead text descriptions entered by doctors. Meanwhile, the hospital is working with the National Library of Medicine to use a more clinically accurate coding system for those text descriptions.

The four met again this week at a health conference in Boston called Health 2.0, where deBronkart lauded Google for its transparency and Ziegler admitted he learned from the experience.”We’re glad this happened because we and many others now better understand the limitations of certain types of health data and we are working with partners to improve the quality of the data before it gets to Google Health and our users,” Ziegler wrote in the blog.

All’s well and good, but how many other hospitals are sending potentially inaccurate billing data to personal health records? And how many other patients could discover major errors in their electronic medical history? Pam Dixon, executive director of the World Privacy Forum in San Diego, doesn’t think the Boston case is an isolated incident. ”There is a real trend to pull all of your data into one big melting pot, and this is just the tip of the iceberg,” she said. That’s the stuff e-health nightmares are made of.